Articles: caregivers.
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Relatives of intensive care patients make an important contribution to recovery and perform a variety of tasks. Due to the demands on the relatives and their services in the ICU and after their discharge, stressful psychological, physical, social, and financial consequences can arise or worsen. Relatives often compensate deficiencies in treatment, especially through a lack of communication and a lack of continuity of care. ⋯ Structured communication between relatives and the treatment team as well as active involvement in nursing treatments can alleviate stress symptoms and the feeling of powerlessness. Prescient discharge management for ICU patients and their relatives reduces PICS risk. Specific and comprehensive offerings of advice and support for relatives can help to perform and process the effort between everyday life and care tasks.
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Observational Study
Spectacle-wearing compliance and its associated determinants among infants with bilateral corrective refractive errors: An observational study.
This study aimed to evaluate spectacle-wearing compliance and identify the determinants associated with it in infants with bilateral corrective refractive errors. Infants aged < 3 years with bilateral corrective refractive errors who were supplied with spectacles for > 1 month were enrolled at the pediatric comprehensive clinic of Zhongshan Ophthalmic Center. Spectacle-wearing compliance was evaluated by calculating the percentage of spectacle-wearing time in the awake time (STIT), and its potential determinants were identified based on interviews with the infants' caregivers using univariate and multivariate logistic regression analysis. ⋯ Besides, spectacle-wearing compliance was positively correlated with the weight of spectacles (P < .01), exhibiting a decreasing trend with the weight of spectacles. Overall, spectacle-wearing compliance requires improvement. Moreover, efficient strategies aimed at improving spectacle-wearing compliance, such as enhancing communication between caregivers of different infants regarding spectacle-wearing experience, raising awareness about the importance of wearing spectacles, and reducing the weight of spectacles, are urgently needed.
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Caregiver Burden with Duchenne and Becker Muscular Dystrophy in Japan: A Clinical Observation Study.
Objective Skeletal muscle weakness and cardiomyopathy can be seen in carriers of dystrophinopathy. Therefore, the health management of caregivers of Duchenne/Becker muscular dystrophy (DMD/BMD) patients who are themselves carriers is an important issue. However, few studies have focused on caregivers who have dystrophin mutations. ⋯ The health-related quality of life score (Short Form 36; SF-36) in caregivers was slightly lower than the Japanese standard scores in the sections of physical functioning, role limitations-physical, bodily pain, and social functioning. Conclusion Some caregivers of DMD/BMD patients can themselves have muscular or cardiac symptoms and a heavy care burden. It is therefore necessary for carrier caregivers, especially women, to undergo regular health checkups and receive appropriate health management.
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Studies from multiple countries report that most hospitalized children, especially the youngest and sickest, experience pain that is often severe yet inadequately treated. Evidence suggests this can lead to immediate and lifelong consequences affecting children, families, and communities. Partnership and shared decision-making by children, families, and clinicians is the ideal pediatric healthcare model and can improve care quality and safety, including pain care. ⋯ The authors applied a reflexive content analysis to the data and developed 3 broad categories: (1) connecting and sharing knowledge about pain, (2) user-centred designs, and (3) preserving roles. These findings outlined caregiver and youth recommendations for portal configurations that deeply engage and empower children and families in pain care through multidirectional knowledge sharing, supporting caregiver and clinicians' roles without burdening, or replacing human interaction implicit in family-centered pain care. Further research should measure the impact of portals on pain-related outcomes and explore the perspectives of clinicians.
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Palliative medicine · Feb 2024
Randomized Controlled TrialDoes a novel community-based outpatient palliative care intervention for Parkinson's disease and related disorders improve care? Qualitative results from patients and care partners.
Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. ⋯ Clinicians caring for people with Parkinson's disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.